Imagine you've been diagnosed with an incurable genetic disease and you are told you will not only lose your ability to walk and move your arms, but you will die between now and the next 18 months. What would you do?
My name is Avery Lynn Canahuati, I'm almost 5 months old, and this has become my reality. But before I die, there's a few things I'd like to accomplish...this is my bucket list and my story.
SHARE IT & HELP ME TELL THE WORLD ABOUT SMA!

Saturday, March 23, 2013

Excellent news in the fight against SMA!

Families of SMA and Nationwide Children's hospital have agreed to a 3-year cooperative agreement in the amount of $3,752,462 to help further fund pre-clinical drug development of Dr. Brian Kaspar's Gene Therapy program.

Please continue to share Avery's story by updating your social networks, e-mailing all of your contacts, and talking to your friends/co-workers. The more people who are aware of SMA, the less likely future children will be affected by SMA, and the more likely there will be a cure for Avery's friends who already have SMA!

5 comments:

Fantastic news and I can't say it's totally because of Avery that the test was done but I'm watching A Baby Story but a genetic counselor suggested that a couple have the test done early in her pregnancy. Turns out mom was a carrier even though it didn't appear that dad was. Her amnio came back okay but as soon as I heard them mention the test I thought of your daughter and your family and the reach she will continue to have.